Children with Special Health Care Needs (CSHCN) are children who have, or are at an increased risk for, chronic physical, developmental, behavioral, or emotional conditions, and who also require health or other services beyond that of children in general. Parents of CSHCN face unique challenges such as high stress, being blamed for their child’s challenging behaviors, and strained family relationships.
Parents in the Chinese community have expressed interest in learning behavior management skills for their children with special health care needs. Together with Quality Services for the Autism Community (QSAC), our team of health educators at the Charles B. Wang Community Health Center (CBWCHC) worked to adapt and translate QSAC’s Applied Behavioral Analysis (ABA) parent training workshops for Chinese-speaking parents. ABA is an evidence-based intervention that can be used for any child with challenging behaviors, including children diagnosed with autism. This technique is used to understand behaviors and create strategies for promoting and maintaining positive behaviors.
The QSAC training was offered to 27 Chinese-speaking parents of CSHCN. In order to assess training impact and obtain feedback from parents to improve programming, CBWCHC’s Research and Evaluation Department conducted a qualitative study of parents, trainers, and interpreters who were a part of the program. The R&E team held two focus group seminars with eleven parents, as well as two structured one-on-one interviews with the training program’s trainer and interpreter, to obtain feedback on the delivery of this program and its impact on participants.
Impact on Participants
Overall, parents felt they had gained skills, knowledge, and the ability to share and use these new skills with other non-special need family members. They also felt less stressed and more hopeful about the future.
“…after attending the training, I know to follow the steps she taught to teach my child.”
“I have more self-confidence than before in communicating with my child.”
Parents expressed their thoughts on program benefits and areas for improvement. For example, they enjoyed the social support of other CSHCN parents but also felt that they needed more time in each training session.
“When we interact and understand each other, we find solutions to many problems. Also, we have a common language [which helps us to] feel like…very close friends.”
“When the class was finished, there was an explosion of questions. Many parents wanted to ask questions but they didn’t get a turn to ask.”
The trainer noted that although the parents were active participants and seemed to enjoy the workshops, they believe the series of trainings would have benefited from the addition of more hands-on activities and videos. The interpreter indicated that educational background may have been associated with ease and speed at which parents were able to understand the program’s content. They also felt that the training may not be applicable to parenting older CSHCN. They suggested future training with parents of older CSHCN should be tailored to focus on the developmental needs of older children.
Reflections from parents and program staff speak to the importance of having culturally, developmentally, and linguistically appropriate training for Chinese parents of children with special health care needs —the positive impacts of the program allowed parents to improve skills, knowledge, stress, attitudes and family life. Both QSAC and CBWCHC aim to improve upon the program by incorporating parent and trainer recommendations in the future. Efforts will be made to incorporate more hands-on activities, tailor the training’s content based on age and associated developmental stages, and make the content more accessible to parents with varying levels of education.
This evaluation study was presented at the 4th Annual NYU Health Disparities Symposium, the United Hospital Fund and GNYHA’s 29th Annual Symposium on Health Care Services in New York, and the 2018 Chinese American Medical Society’s Annual Scientific Conference. The project team included: Matthew Chin, Dr. Sherry Shao Fen Huang, Dr. Naumi Feldman, Xing Li, Chun Hui Dong, Mei Yee Lau, Pauline Sikat, and Dr. Angela Chan.